Vulvodynia Support
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» Hope to all my suffering ladies
Feels like theres no help out there!!!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Feels like theres no help out there!!!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Feels like theres no help out there!!!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Feels like theres no help out there!!!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Feels like theres no help out there!!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Feels like theres no help out there!!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Feels like theres no help out there!!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Feels like theres no help out there!!!! EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Feels like theres no help out there!!!! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Feels like theres no help out there!!!!

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Post  laura224 Tue Dec 20, 2011 1:40 pm

I am a 28 year old female, who has been suffering for the past two years, with endless visits to my doctor, gynaecologist, GU clinic ect. my partner ended up having an affair and leaving me because of this, it also affects my social and work life.
Sex has always been painful for me and i would be in pain for days after it and also bleed, I then got a yellow/green discharge and chronic stabbing/burning pains in my vaginal area, my partner had admitted to having an affair and thought he had given me an STD, so have had swabs done on at least 10 different occasions by different people, but they come back negative but sometimes says there are abnormal white cells.
I had a laperoscopy where mild endometriosis was found and lasered off and was told that this was only the cause for painful sex, not for my other pain and discharge, i then had a hysteroscopy where i was told my womb and vagina looked fine and they couldnt find a cause for the discharge!! i have had my bloods and urine tested which also come back clear, and also had my urethra looked at which was also normal.
My doctor told me i could be suffering from vulvodynia and prescribed me amitryptelene, which sometimes gives me some relief, however it doesnt last long!
It is really affecting my everyday life, sometimes the pain gets so bad i cant walk, i feel stressed and depressed and have not had much support offered to me, does anyone have similar symptoms? or can offer anything else to try???

laura224

Posts : 1
Join date : 2011-12-20

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Post  stephsue Sun Dec 25, 2011 5:46 pm

Hi Laura -
Sorry to hear you've had so many medical issues! That is so tough. Have you gotten a chance to see someone who specializes in vulvar or vulvovaginal disorders? That is a good starting off point for you. Unfortunately even many OBGYN's still aren't terrifically knowledgable about these things. Fortunately, there are many MANY other things you can try besides amiptryptiline, but seeing a good specialist would be the best way to determine which would make sense for you.

If the pain is all burning/stinging then it could be a skin issue (sometimes people even are treated by dermatologists, but again, not all may know that much about VV). For this people will try topical steroids, topical estrogen and/or testosterone cream if there is a hormone imbalance contributing to things - I also try to follow an anti-inflammatory diet (google Dr. Weil anti-inflammatory food pyramid for a good reference), and while I'm unsure how much it is helping the VV, it definitely improves my health overall!

You might also have some pelvic muscle issues, which I would imagine would be even more likely since you've had a few surgeries. Again, you would need someone knowledgeable to diagnose this and refer you to a PT, who might then help work out some of those muscles and do biofeedback to teach you to relax them. There are also other drugs that you could probably try if the amitryptiline is not doing much for you.

It can be hard to find a good specialist depending on what area of the country you are in - I have lived in Boston and NY and could recommend people there if you want to PM me, and I'm sure members of the forum from other areas could make recommendations too. You can also go talk to some doctors and see how much they know about vulvodynia/vulvar vestibulitis/pelvic floor dysfunction. If they are familiar with all of these things then that is a good starting off point and they may be able to help, or at least refer you to someone who knows about them! Hope that you are able to find some relief and a good clinician to help you!
-S

stephsue

Posts : 5
Join date : 2011-12-24
Location : Boston

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